Endometriosis affects 176 million women but there is no cure, no known cause and treatment is limited. There is no case for a study about its impact on men
‘Studies like this one make it look like the only way endometriosis will get attention is if we highlight how it hurts men. It’s not enough for women to share their countless stories of pain and suffering.’
Endometriosis is a disease that affects one in 10 women of reproductive age. It affects approximately 600,000 women in Australia and 176 million women worldwide. Yet endometriosis receives very little funding and attention from the medical world. In fact, many people have never even heard of it despite it being so common.
I was diagnosed with endometriosis when I was 15 years old. This only happened after I spent two years trying to convince doctors it wasn’t normal that I had pain so bad during my period that I couldn’t walk. (And my diagnosis was relatively quick – the average time taken for diagnosis is eight to 10 years.) Since then, my life has been filled with surgery, doctors, medication, invasive procedures and constant pain that impacts everything I do. It took me longer to finish school because of endometriosis. I deferred university last year because I needed surgery. I can’t do jobs that require me to stand for long periods of time. I often have to cancel plans because I’m in so much pain.
A big part of the struggle with endometriosis is how little is understood about it. I see good doctors who care and want to help, but there is only so much that can be done when the funding and focus is not there. Researchers still do not know what causes the disease and there is no cure. Treatments are variable in their effectiveness.
On Tuesday, I was alerted to the fact that the University of Sydney has recently approved research into how men’s sex lives are impacted by being in a relationship with someone who has endometriosis. This study is being conducted by master’s student who wishes to explore “the impact of endometriosis on men’s sexual wellbeing”.
Considering the tiny amount of attention and funding endometriosis gets, it’s enraging to see someone conducting a study into how this disease impacts men. Women’s sex lives are far more impacted by endometriosis than men’s are, and if any study on this area is being conducted it should look at how women and their sex lives are impacted. Endometriosis does not hurt a man’s sexual wellbeing. It does however impact every aspect of your life when you suffer from it. It can mean that sex is often painful and unpleasant, penetration can cause bleeding and pain remains for days afterwards.
tudies like this one make it look like the only way endometriosis will get attention is if we highlight how it hurts men. It’s not enough for women to share their countless stories of pain and suffering. How it limits their ability to finish study, work full time or even have sex. It’s not enough to describe the surgeries, and the medications, the invasive procedures that provide little to no relief. The only way we can get people to care is to tell them that men are impacted too.
There are so many other things that should be looked at regarding endometriosis before we look at how it impacts sex for men: a less invasive way to diagnose, understanding the ways it impacts the everyday life of people who have it, proper pain management, raising awareness so women aren’t accused of lying, a cure.
Women have to fight to be believed that there is even something wrong. Then when they are finally diagnosed they have to fight for better treatment and pain medication just so they can live with some normality in their life. Doctors treat you like you’re making it up or you’re exaggerating.
Some doctors don’t even know what endometriosis is. I once spent a night in the emergency room in so much pain I could not walk, and the doctor informed me that he had to google endometriosis because he wasn’t totally sure what it is.
These are the things women have to put up with when they have endometriosis. These are the ways that women suffer because of endometriosis. So much of having this disease is trying to get some attention on it, and trying to get people to research it. In the past year, there has been more coverage of it in the news, but to see a study about how it impacts men, particularly their sex life, feels like one step forwards and two steps back.
This is not about attacking the researcher – I contacted her to try to understand her reasons but she had not responded at the time of publication. Endometriosis affects about the same number of women as diabetes and costs about the same but receives 5% of the funding of diabetes. There’s no cure, no known cause and not even a reliable treatment. This is about frustration of how endometriosis is treated at the moment. This study fits into a wider context where women’s pain is not always acknowledged.
It is damaging to set a potential precedent of male-centric studies into the impacts of endometriosis. There is no logical way that any discussion about endometriosis should focus on how it impacts men, or the partners of people who actually have it. We can barely get a conversation about endometriosis going in the first place. We should not start a conversation about endometriosis to see how men feel about it, particularly not to see how it impacts their sex life.
- EndoActive is collaborating with The University of Sydney to conduct research on the endometriosis patient experience. To share your experience as an endometriosis patient and contribute to patient-led research, you can complete this survey: https://www.surveymonkey.com/r/endoexperiences